Updated March 26 to clarify that Dr. Darren Russell is not Steven Spencer's personal doctor; he was a physician and PrEP/HIV expert brought in to advise on the case. No patient confidentiality has been violated.
As Plus previously reported, a news story surfaced last week of a 27-year-old Australian man, Steven Spencer (above left), who claimed he acquired HIV while practicing PrEP as an on-demand strategy. We shared thoughts and reactions to the sparse details available about this event, but later realized we wanted to know more facts. So, we reached out to Dr. Darren Russell (above right), clinical adviser for Australasian Society for HIV, Viral Hepatitis and Sexual Health Medicine. Dr. Russell consulted and advised on Spencer's specific case, and agreed to share previously unmentioned facts that have not been reported elsewhere. Here's what we've uncovered.
How did you get involved in Steven’s case?
I am a member of the team that is currently reviewing Australia’s PrEP Guidelines. They were first published in July 2017 and were then reviewed last year. Now we are rewriting them to include newer information. The Australian Guidelines were a very important part of helping the process of getting the Australian Government to reimburse PrEP on the Pharmaceutical Benefits Scheme on 1 April 2018 — this has made PrEP available to all Australians at an affordable price. When community-based organizations heard of Steven’s case they worked to support him but also realized that there would be media attention and so they reached out to the scientific and clinician communities to help produce the best result possible in terms of disseminating accurate information. We had a teleconference to discuss some of the complex issues involved and have continued discussions since.
I have been working in HIV for 28 years and have been a big fan of PrEP and its enormous potential, along with U=U, to reduce transmissions of HIV down to very low levels in some communities. I have also done a lot of study into on-demand (event-based) PrEP and have spent two months over the last two years at St. Louis Hospital in Paris under the direction of Prof. Jean-Michel Molina who led the IPERGAY study [the groundbreaking PrEP study], and who leads the current Prévenir study, which looks at both daily and on-demand PrEP in the Paris region. The PrEP clinics at St. Louis Hospital gave me a real insight into how on-demand PrEP works in practice and how men can move seamlessly between daily and on-demand PrEP, depending on their circumstances at any particular time. By default, I think I have ended up being an Australian expert on on-demand PrEP!
As a researcher, is it ever problematic to rely solely on self-report?
There are lots of difficulties in relying solely on self-report when it comes to people on PrEP who contract HIV. In some cases, it can be very difficult to know when, or how, the HIV transmission occurred. And even when people try very diligently to figure out how the transmission took place, they are sometimes not correct. We see that with regard to contact tracing after an HIV seroconversion. Here, we try to find any recent sexual contacts who may have HIV and aren’t aware so that we can offer them an HIV test and subsequent treatment if they turn out to be positive. It is not uncommon at all for someone to be sure they contracted HIV from a certain individual at a certain time, only to discover that that particular person, in fact, does not have HIV. For an individual who seroconverts while on PrEP I feel it is important to help them to understand how this has come about, as far as it is possible to do so. Most people have a curiosity about these things and it can help them to come to terms with their diagnosis and move on.
Do we know how Steven acquired HIV while using PrEP?
At this stage, I don’t think we can say that we know how Steven acquired HIV, or even when he acquired it. He has made this point himself in an interview he gave. I understand that there are current efforts to try and understand these things better.
Is there any way researchers will be able to measure adherence as they have done in the other reports?
One thing that Steven’s situation has taught me is that on-demand PrEP is going to throw up some unique challenges when it comes to understanding if, and how, PrEP may have not worked well enough to prevent someone from contracting HIV. We know that with daily PrEP there have only been three confirmed failures of this method worldwide — in Toronto, Amsterdam, and San Francisco. In these situations, blood — and in the San Francisco case — hair samples were taken and drug levels could be tested. This can confirm that there should have been adequate drug levels to prevent HIV transmission. In two of these cases, a resistant strain of HIV seemed to get past the PrEP, but in the case of the man in Amsterdam, he did not get a resistant virus and we really don’t quite know what happened. When it comes to on-demand PrEP, we have a problem with this sort of detective work.
For example, if I am taking PrEP on demand but my only risk for HIV was a sex party two months ago and I haven’t taken PrEP since, then how do we test levels for a one-off event that was a long time ago? Blood tests will be useless as the drug will be well and truly out of my system by the time my HIV test showed up positive. Hair samples will be next to useless, too. In such a case, I am not sure how we would figure things out, other than by questioning the person and their health care team. We need to think about this question a lot more and Steven’s case has given us the opportunity to look at this issue.
Does Steven have a strain of HIV resistant to any medications?
My understanding is that Steven has a fully sensitive virus; that is, there is no evidence of resistance. This can be seen as one of the advantages of on-demand PrEP. If someone contracts a fully-sensitive virus and then only takes PrEP now and again, their chance of that virus becoming resistant to the drugs in PrEP itself is much less than if the person is taking it daily.
From your standpoint does this case change anything you know about PrEP or any recommendations you would make to a person using PrEP?
For me, this case changes nothing about PrEP. We know that PrEP — if taken correctly either daily or on-demand — is highly effective and has prevented thousands of HIV transmissions worldwide. In my opinion, it is far and away the best way for gay and bisexual men, and many others at risk, to prevent HIV infection. Even in Steven’s case, where we don’t yet know what has actually happened, it allowed him to be linked in to a healthcare provider and to be diagnosed early with HIV and then to rapidly commence antiretroviral treatment, which will ensure he stays healthy and well, and will also prevent him from passing his infection on to others.
PrEP is more than just a tablet, it is a holistic means of preventing HIV and to be engaged in healthcare. I would still wholeheartedly recommend PrEP to those at risk and for those having anal sex I will continue to promote on-demand PrEP for those who are suitable. On-demand PrEP certainly does not suit everyone’s needs, but it is a valid choice taken successfully by thousands of men around the world. Vive la différence!